Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can Somebody Confirm Something For Me


paranoid

Recommended Posts

paranoid Newbie

Can somebody confirm if the stuff that is wrote here is true or if it's a load of crap to incite fear into people and scam them?

Open Original Shared Link

 

I don't know about everybody else, but I went through 7 years of pure physical and mental pain before the doctors finally told me I had Celiac disease. 7 Years of them telling me the pain was "all in my head".

I've been eating gluten free for I think 2 or so years now, and although things are much better, I'm still getting pains when I go to the toilet. Other than that, I'm usually fine for the most part.

My anxiety has also been going away. I've stopped thinking so negatively, and I've stopped trying to self diagnose problems by looking at the internet which always tells me the worst of things.

However, today I checked something and the title of that page that I linked made me double check.

 

I just need to know that  being Celiac isn't actually going to kill me, especially because I had those 7 years of eating gluten (my bowel is probably ruined beyond repair). I don't usually make posts like these, and instead tend to deal with things as they come, but I don't want my anxiety to stick around for as long as it did last time, so it would mean a great deal to me if somebody can confirm if what that site is saying is true or not.

Also, one more thing while I'm posting this. Does anybody else who has been gluten free for a while still get pains in their sides when using the toilet?

 

Thanks in advance.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

I always like these people who take bits and pieces of research and spin it to sell thier products.

Perhaps pain in your sides when going to the bathroom is how your body works? I am not sure that a little gas pain is unusual or fatal? Lol

Jays911 Contributor

Paranoid, take a deep breath. Actually, breathing correctly helps in many ways. You will be fine. But you will still experIence sensations "normal" folk do not. Worry less . Being happy is only part physical. Count your Blessings.

ravenwoodglass Mentor

I went undiagnosed for over 40 years. The last 15 were a living hell with me up for 2 to 3 hours every night with extremely painful D that would give me relief for only a few hours. Doctor after doctor told me there was nothing wrong with me even when I got to the point where I was covered in DH sores, had issues with memory, joint and muscle pain that made it impossible to hold a pencil or open a jar and needed canes to walk. I have healed for the most part. I still have some nervous system issues that are permanent but those started in childhood and I am just shy of sixty. I am still here. Don't let the fear spreaders on the internet that are trying to sell you something scare you. You will heal, as you have already seen. Some of us will still have a few issues but it doesn't mean that you won't or haven't healed. 

One thing you might want to do is make sure you don't have another intolerance. The most common are dairy and soy. If you are consuming those you might want to consider dropping both and then add them back in one at a time for a week. If the pain resolves and then comes back when you add them in drop the offender out of your diet for a couple months. 

GF Lover Rising Star

That is a "Headline Grabber" and it's all done to get you scared and buy their products to "save your life".  It's very irresponsible.  The Gluten Free Diet puts Celiac in Remission once the gut is healed.  You do not continue to damage the body for your whole life.  That's not to say that you'll never get any diseases or conditions through your life.  7 years undiagnosed is around the average.  Some of us went 15 to 20 years undiagnosed and have permanent damage from Celiac and problems stemming from Celiac that we deal with for life.  

 

Don't be scared Hun.  Eat cleanly and you'll be fine.  I'm so glad you wanted us to look at that link.  I hate when sites try and scare people.  

 

Colleen

StephanieL Enthusiast

Follow the money.  

If they are trying to sell you something, they are going to try and scary you into buying it.

 

Hang in there!

cyclinglady Grand Master

I agree, it is the money.....but there is some truth to it.

Let's face it. Just eating gluten free can help you heal from celiac disease, but as a whole our typical Western diet has a lot to be desired. We are eating way too much food, too much sugar, too much junk.

Living with a gluten-free eater for 12 years prior to my diagnosis, made my learning curve shorter. Looking back, I was undiagnosed for well over a decade. I think I survived because I was able to indentify other intolerances, had my gallbladder removed, exercised, and ate gluten light (at least for dinner ). Stomach issues really resolved (used to have an IBS diagnosis prior to the GB surgery) and the anemia came and went. My body kept adapting and symptoms changed.. I improved over the first year on the gluten-free diet and avoiding foods such as eggs, milk, nuts, and garlic as I had been for years. Then I discovered new intolerances like those found in gluten-free recipes -- gums. So, I cut those out.

After a year I got my diabetes diagnosis. So, I researched and decided that a low carb high fat diet worked well for keeping my blood sugar stable and in safe ranges. I have been on this diet (plus, gluten-free) for a year and a half. Boy, this really helped my healing and I feel great. No grains, except for occasional treats, and whole foods that I make.

I am back to training for century rides (100 miles), my brain is back, thyroid stable (fingers crossed) and I am hoping for a good bone scan result in July!

Am I 100%? Well, I am 53 and am aging like everyone else! I will never be 30 years old again!

All the "studies" mentioned in the link? The bottom line is that no one knows! Not enough research has been done and that is from the leading experts. One OP posted minutes from an FDA conference this week. The manuscript is 268 pages long or so. The goal was to determine what kind of drug could be developed that would not cure celiac disease but perhaps lessen the emotional issues (e.g. Going out to eat and preventing cross contamination). What was agreed on by all the participants is that they do not have enough research! A few studies just does not cut it! Think about the daily news. We are bombarded with things like coffee is good for you and the next study shows that it is bad.

It is hard to sift through everything on the Internet. What is valid and what is not.

So, just go forward, adhere to the diet and identify other intolerances that may be bothering you. Eat healthy and cut out the junk!

I wish you well.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I agree.  I lot of scary headlines there that don't have much behind them.  Some of them may be true but I think many were taken out of context.

 

It can take a few years to heal from celiac disease.  Going gluten-free isn't like avoiding an allergen - it isn't a quick fix.  Stick it out for the long run and you will get better.  No, you may not get back to 100%, but many celiacs do. Just hang in there and you may see results.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748

    Nicole Poirier
    Newest Member
    Nicole Poirier
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.